Saturday, September 17, 2011

Wave of Awareness

Our family is going to be WAlKing to support Hydrocephalus Awareness and Research. What exactly does that mean?? Well...
According to the Hydrocephalus Foundation:
"Hydrocephalus means there is an abnormal accumulation of cerebrospinal fluid (CSF) within the ventricles of the brain. This fluid builds up and causes the ventricals to enlarge and the pressure inside the head to increase. Hydrocephalus cannot be cured, but can be treated. The most common treatment is a surgical procedure to place a shunt inside the person's brain. The shunt channels the flow of fluid aways from the brain into another part of the body where it can be absorbed and transported ino the bloodstream. If left untreated it could result in permanent brain damage."

Hmmm, a lot to take in. Especially when I first heard the news that my son Luccio has Hydrocephalus. Luccio was born with a Neural Tube Defect (NTD) so essentially that meant that a part of his skull had a small opening causing fluid to build up into a small pocket that looked like a skin covered golf ball on the back of his head when he was born. We fondly called it his "Lumpy." Thankfully at 5 months old Lumpy was removed and his skull was repaired. But, closing up that area caused the fluid to build up and thus Luccio now has Hydrocephalus. So at 14 months old he was "shunted." His neurosurgeon had tried other less invasive pocedures first, but alas the shunt could not be avoided. So Lucci has a tube that is inserted in his ventricles around his brain and it drains fluid into his abdomen. Thus far, thank God its working very well!!

In the beginning it was very scary to me. Greg and I need to be able to be Luccio's advocates. But, it was so overwhelming. I felt like I am wasn't sure if I really knew enough about what i am doing. I think we have good plan in place for him, but is it aggressive enough? What does it mean for his future? For school? With friends? Sports? We are learning as we go. And we have met some wonderful people along they way.

We were going to a support group that helped a lot because we were able to talk with other parents in similar situations. But, in talking with them I realized more than ever that this is an ongoing process.

Hydrocephalus isn't going to go away. Luccio will have it and have to deal with it for the rest of his life. It makes me sad because I don't want him to think that there are limitations placed on him because of it or to struggle in anyway. I want to bubble wrap him and homeschool him so he won't have to deal with insensitive teachers or students! Not logical I know.

Right around Luccio's 3rd birthday, anxiety over him starting preschool was getting me down. I was worried about all that would be out of my control and all that could and would affect him during his school days. After a good cry and a long talk with my brother, I decided to take action! I become more educated about Luccio's rights and needs. We signed him up for school and give each year's teachers the benefit of the doubt. We prepared information for them so they became familiar with Hydrocephalus. And as a family we will educate our loved ones and those involved in Luccio's life as needed. We try to not only hope for the best, we expect it!! We will be his advocates, we will see to it that his needs are met and that he reaches his fullest potential. We will pray that God continues to bless him and our family! And we will pray for his teachers too because I pity the first one that isn't up to par.

And of course, homeschooling is always a great back-up plan, and maybe the bubble wrap too!!

And in the meantime, we have teamed up with the Hydrocephalus Association and we are going to WALK for awareness and pray to someday find a cure! We are so very blessed with generous family and friends that are helping us so much along the way!!!


  1. You guys are awesome parents and Luccio is lucky to have you. You will all learn to deal together and he will know that he is loved and can accomplish what ever he wants to.
    He is a smart little guy and has an awesome personality!

  2. Still a great blog. Look at our lil guy now..... don't think anyone could love school more than he does. He has had some amazing teachers and teachers helpers along the way.
    Never thought I would see him play soccer.....he loves it.
    Of course I would love to see him in a helmet and protective gear or bubble wrap on.
    We will always stand by him and encourage him along the way.
    He is the reason we will be walking on Saturday so one day there will be a cure for Hydrocephalus but, for now we will be his advocates and spread awareness and raise funds for research.
    God bless Luccio and all who have Hydro and lets pray we will see a cure.